Assessment coming soon

Amy - posted on 11/19/2008

I agree, get to an early intervention program as soon as possible. They will test to see if he has any delays and then you can go from there. Our son was diagnosed in March 2008, when he was almost three. Even with 3 different proffessionals diagnoses we still get the "he's normal, just let him be a boy." So hang in there and don't let anyone , even doctors tell you otherwise. We went through a metabloic specialist, an allergy specialist, a gastrointestinal specialist, and a pediatrician for 2 years that couldn't figure out what was going on with our child. It was when the doctors gave up on our son that we found hope through an aquaintance that worked with children with disabilities and said that we should get him in to an early intervention program. Now we are on the right path and our son has made improvements that we never thought possible. Life is actually enjoyable with him for the most part. Now we are doing a lot of fine tuning. Good luck and hang in there. It is truly a journey having a child with a disability.

Andrea - posted on 11/19/2008

Hi Kristy -

My son was diagnosed at 20 months old, and even though I had some people telling me...boys are slower...some kids don't talk till they are 3 or so...etc etc. I knew deep down that my son was just a little different. It was most apparent when friends would say oh - xxxyyy said this today! Or did this today! I was like- really? Besides the developmental delays, my son exhibited strange repetitive behaviors that I thought were odd. (Like flipping over household items in the same sequence over and over again).

My ped said to wait a little to see what would happen, but thankfully I was due for our second son soon, so I had him evaluated through EI and then 4 months later he was at the developmental peds office.

I agree with Debra - as soon as EI sees him, try to get as many therapists on his IFSP (thats what we call it in NY) and increase services as wuickly and as manageable as you can. It is overwhelming - VERY - but so necessary so your little guy has a chance to lead a "normal" life. I would be happy to talk with you more if you would like. The only thing that helped me navigate throught the whole process was other moms in the area that were going through the same thing, or just a little ahead of me.

My email is successstory1976@yahoo.com. BTW - my little guy who is now 33 months old - is talking (he doesn't have the correct conversational concept down yet - but he is getting there), and doing so many other things now. Part of his success though is because of the GFCF diet...which is a whole other ballgame and I would be happy to discuss that with you as well.

Good luck to you, your little guy anhd your family as you start this emotional but rewarding process! :-)

Andrea

Tiffany - posted on 11/18/2008

trust your instincts. YOU know your child best and spend the most time with him. My son was officially diagnosed at age 2 but we suspected long before. if we would have listened to well-meaning friends, family, and professionals we wouldn't have gotten him started in the treatment programs during those early critical months/years. My son is now 3 1/2 and is doing fantastic. the therapy REALLY helped. it's scary and overwhelming and an emotional roller coaster, but, there is hope. he's still you sweet, smart, unique little boy - don't let anyone tell you otherwise. good luck.

Debra - posted on 11/18/2008

My son was diagnosed with PDD NOS at 2 1/2. He is 4 1/2 now. My husband & I had some nagging thoughts on & off starting at 1.5 that something was wrong but we couldn't put our finger on it. (It was tough for us b/c he was our first child.) He did do a lot of things that neurotypical kids do, but eventually it became apparent that he was not developing like the other children. The first symptoms included: he stopped responding to his name, poor eye contact, he didn't point, he didn't respond w/interest to certain external stimuli that other kids did (ie: a plane in the sky), & social language didn't develop. My son was VERBAL (still is); he had a very good vocabulary, but he didn't talk WITH us. He didn't use language to express his needs, wants & interests. Our biggest complaint was our pediatrician. Most really don't know the signs of ASDs. My son was responsive in the dr's office but there were so many ?s the doctor should have asked that would have made us go for a diagnosis sooner. The key is to be aggressive & proactive w/ any delays your child my have (even if he isn't on the spectrum). I, as well as many of my friends, have found you are on your own with deciding what treatments you should use for your child. If you are concerned, I recommend calling early intervention right away (even if your son isn't on the spectrum) so that certain therapies can be started ASAP. I don't what your son's issues are but you should start to address them even b/f the dr. visit, as you have found, it takes a long time to get that appt with the developmental pediatrician. You also want to contact EI soon b/c many states/counties have a lag b/f they can come in & give an eval & there there is a delay b/f you get the therapy started. One of the best therapies to start ASAP is speech (by a certified speech pathologist ) - if that's your issue - b/c depending on where you live - there could be a shortage. Also, if your child has delays -get ready to contact the school district to see what the process is for preschool (he may qualify for a "preschool disabilied" program &/or services. You need to do this soon b/c your son will be cut off from EI at his 3rd bday. Depending on your son's needs (if there is a problem, which there may not be), look into treatments such as ABA. If found this very helpful for my son. It seems to be the best option for most kids. Other approaches - verbal behavior approach, DI/floor time. These can be found online or in most books in the book store.

I also recommend joining an on-line community as a this one. You can get lots of info from other parents. I live in northern NJ & really recommend MOSAIC on yahoo. Great info. Lastly, if you do get a diagnosis (& I hope you don't) - look into whether there is a local COSAC group or something similar. they have free parent training which can be very helpful.

It's tough to explore these possibilities but you doing the right thing if you have concerns. Best thing for ASD kids is to get treatment/intervention right away. It's a slow journey w/ups & down but it is NOT the end of the world, even if may feel that way when a parent gets the dx. My son goes to a very good school that specializes in ASDs & is a very happy little boy. I wish you luck & hope for good news for you.